(NAPSI)-Amyotrophic lateral sclerosis (ALS) is a fatal neurological
disease that attacks the nerve cells. It first gained national attention as
Lou Gehrig’s disease, named after the famous baseball player who was
diagnosed with ALS in 1939. To date, the cause of ALS is unknown, and there
is still no known cure. The disease strikes quickly, usually leading to death
within two to five years of diagnosis. But every person with ALS has an
individual story, and understanding these stories will help researchers ultimately
piece together clues about this disease.
Ed Tessaro was diagnosed with ALS in 2009. As he
learned to cope with this diagnosis, he reflects, “I’ve never
considered myself a victim of the disease because I believe in my heart all
of us have a wheelchair. In my case, it’s quite literal, but with
everything that goes on in my life, I realize that every family has had a
crisis.” One of the things that helps him and
others with ALS is reaching out for community support and resources. “The
ongoing struggle is to encourage newly diagnosed people to come in and talk
about their condition. I want to help people learn about the National ALS
Registry, clinical trials, and other resources that can provide support and
hope.”
The National ALS Registry helps gather information from those who are
living with this disease. Researchers from all around the world can access
the Registry data to help scientists learn more about what causes this
disease. Everyone’s story is different, and everyone’s piece of
the puzzle is essential. The Registry has found that almost 16,000 persons
with ALS live in the United States, as of 2014. It is important to include as
many people as possible living with the disease to get the most accurate
information. When patients join, it helps give researchers more information.
This could lead to a better understanding of the causes of ALS, because
learning more about the disease is one step further in the battle to defeat
it.
Concludes Ed, “It’s tough, but maybe we can fling open a door
or two in the next couple of years of research. I’m happy just to stall
this thing and get all of us to another chapter in our lives.”
If you or someone you care about has ALS, please consider learning more
about the National ALS Registry by visiting www.cdc.gov/ALS.
““The
ongoing struggle is to encourage newly diagnosed people to come in and talk
about their condition. I want to help people learn about the National ALS
Registry, clinical trials, and other resources that can provide support and
hope,” says one patient. http://bit.ly/2w8jMCI”
On the Net:North American Precis Syndicate, Inc.(NAPSI)